A1F’s role as the global leader among the world’s Alpha-1 community was highlighted recently at an Alpha-1 Awareness Month Recognition Forum held in conjunction with European Parliament on November 20, in Brussels, Belgium.
In collaboration RPP Group, and in partnership with the Alpha-1 Europe Alpha-1 Alliance, A1F seized on an opportunity to build momentum for rare diseases, and specifically the Alpha-1 community as the EU unlocks key opportunities associated with the upcoming Biotech Act and their ongoing implementation of the Substances of Human Origin (SoHO) regulation. A1F recognized the time is now to push for fair access to plasma-derived therapies and better care for all rare disease patients.
A1F presented to EU Parliament: its historical and considerable investment in funding researchers at European Union based institutions; our commitment to educating European Alphas through our Global Patient Congress and Investigators Conference held this past April in Lisbon, Portugal; and our engagement with EU Parliamentarians and patients through our recent social media video awareness campaign.
While advances in medicine and European cross-border collaboration has occurred, thousands of people living with Alpha-1 Antitrypsin Deficiency (Alpha-1) still face delayed diagnosis, limited treatment options, fragmented care pathways, and significant inequities in access to treatment among different member states. The disparities across European health systems remain profound.
A1F was proud to participate in this important meeting to strengthen awareness on a global scale. During this meeting issues were addressed including presentations on:
- Framing Alpha-1 in broader EU context of rare disease policy, SOHO implementation, and Biotechnology reform (MEP Olivier Chastel)
- Alpha-1 Foundation’s commitment to patients globally (Scott Santarella, A1F President & CEO)
- Treating Alpha-1: Translating clinical research into better patient care (Dr. Marc Miravitlles, European Respiratory Society)
- Alpha-1 across Europe: The Alpha-1 Europe Alliance’s Call to Action (Flaminia Macchia, Alpha-1 Europe Alliance)
- EU Rare Disease Policy in Practice: The European Reference Network for Alpha-1 (Prof. Dr. med. Pavel Strnad, ERN Rare-Liver, Alpha-1 Liver Network)
- Presentation of the EESC’s Opinion on “Leaving no one behind: European Commitment to Tackling Rare Diseases” (Agnes Cser, European Economic and Social Committee)
- Understanding Alpha-1 through patient’s eyes (Fernanda Aspilche Ferro, Alpha-1 Patient Advocate
“A1F is proud of the global leadership role we have played for 30 years. We applaud and support the dedicated action plan presented by the Alpha-1 Europe Alliance to ensure equitable access to diagnosis, care and treatment for all Alpha-1 patients across Europe. The promotion of clinical guidelines, awareness campaigns, research initiatives, and collaboration with healthcare stakeholders to reduce inequalities and strengthen care pathways are at the core of A1F’s mission, and we are committed to helping Alpha-1 EU Alliance and their 5-year strategic framework “Strategy 2030” for the Alpha-1 global community,” said Scott Santarella, A1F President & CEO.
